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Tearfund Zimbabwe Case Study
Family AIDS Caring Trust (FACT), Chimanimani,
Zimbabwe National Network of People Living with HIV (ZNNP+), Chipinge
And
Island Hospice, Harare
EXPLORATORY STUDY ON ROLES AND ATTITUDES TOWARDS CAREGIVER COMPENSATION AND SUPPORT
October 2013
This report was produced at the request of Tearfund. It was prepared by Rodwell Chaitezvi, a Zimbabwean consultant. The author’s views expressed in this report do not necessarily reflect the views of Tearfund.
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Table of contents Acknowledgments………………………………………………………………………….................................... .0 Acronyms…………………………………………………………………………………………………………………………..0 Executive summary…….. …………………………………………………………………………………………………….0 1. Introduction and background……………………………………………………………………………………...0 2. Purpose of the study…………………………………………………………………………………………………. 00 3. Research team…………………………………………………………………………………………………………… 00 4. Methods of the study………………………………………………………………………………………………… 00 5. Pre-‐FGD interviews with current caregivers ……………………………………………………………..00 6. Interviews with past caregivers…………………………………………………………………………………. 00 7. Research findings (ZNNP+)………………………………………………………………………………………… 00 8. Discussion (ZNNP+) ………………………………………………………………………………………………….. 00 9. Research findings (FACT) …………………………………………………………………………………………. 00 10. Discussion (FACT) …………………………………………………………………………………………………….. 00 11. Findings (Island Hospice) ………………………………………………………………………………………….. 00 12. Recommendations ………………………………………………………………………………………………….. 00 13. Conclusions ………………………………………………………………………………………………………………..00 14. References ………………………………………………………………………………………………………………..00
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Acknowledgments
I wish to thank the Tearfund Zimbabwe team, in particular Idzai Marimba for linking me up with Family AIDS Caring Trust (FACT) Mutare and Island Hospice. My sincere thanks to the FACT Mutare team who were forthcoming and timely in their responses to questions and very helpful in arranging field-‐based data collection. To FACT’s past and current caregivers who agreed to meet me and share their time and experiences, I say thank you. To Zimbabwe National Network of People Living with HIV (ZNNP+)’s district focal person, current caregivers and past caregivers drawn from other caregiving projects who took part in this study, I thank you all. I would like to thank the World Vision Zimbabwe team in Chipinge, especially the Area Development Programme (ADP) manager for allowing me to have the Focus Group Discussion (FGD) within their premises, and the Health Officer, for linking me with ZNNP+’s district focal person and for giving me insight into how World Vision Zimbabwe and ZNNP+ work together. My thanks go to Island Hospice’s training coordinator who took time from her busy schedule to participate in this study.
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Acronyms
AIDS Acquired Immunodeficiency Syndrome ART Anti-‐retroviral therapy ARV Anti-‐retroviral drugs CBO Community-‐based organisation CHBC Community Home Based Care DOT Directly Observed Treatment ECD Early childhood development FACT Family AIDS Caring Trust FBO Faith-‐based organisation FGD Focus group discussion HBC Home-‐based care HIV Human immunodeficiency virus HOSPAZ Hospice Association of Zimbabwe IGP Income-‐generating project ISAL Internal Savings and Lending MoHCW Ministry of Health and Child Welfare NAC National AIDS Council NGO Non-‐governmental organisation OVC Orphans and other vulnerable children PC Palliative care project PMTCT Prevention of mother to child transmission TB Tuberculosis TEARFUND The Evangelical Alliance Relief Fund VCT Voluntary counselling and testing centres WFP World Food Programme ZNNP+ Zimbabwe National Network of People Living with HIV
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Executive summary Introduction and background The Evangelical Alliance Relief Fund (Tearfund) is a United Kingdom-‐based faith organisation that is funding HIV-‐related work in many countries including Zimbabwe, through its HIV unit. In Zimbabwe, Tearfund has been funding Family AIDS Caring Trust (FACT), a Community Home Based Care (CHBC) programme, since 1987. FACT has a palliative care (PC) project in three districts including Chimanimani funded by The Diana, Princess of Wales Memorial Fund and Tearfund. The Diana, Princess of Wales Memorial Fund and Tearfund have also been funding Island Hospice, a non-‐governmental organisation (NGO), to provide training to caregivers. Besides training caregivers, Island Hospice has its own caregiving project in Harare, Chitungwiza and Chikwaka in Goromonzi district. World Vision Zimbabwe is a faith-‐based organisation with some HIV-‐related activities among the various programmes they have in Zimbabwe. World Vision Zimbabwe operates in 24 of the 58 districts of Zimbabwe. These are selected by the national and provincial government, with selection of wards by the local authorities. World Vision Zimbabwe provides training and support to caregivers, but they are clear that the government ‘owns’ the relevant structures, and it is to the local government that carers must report. World Vision Zimbabwe sees itself as facilitating the work of others, in particular the Ministry of Health and Child Welfare (MoHCW). World Vision Zimbabwe does not fund NGOs or CBOs (community-‐based organisations), in respect of caregivers; rather, it provides sub-‐grants to some CBOs and supplies some of them with material for caregiving such as uniforms, tennis shoes, bicycles and caregivers’ kits to all carers. World Vision Zimbabwe does not provide allowances and emotional support for caregivers. They do support livelihoods projects such as gardening and poultry in some areas. Training for carers is provided as is required by the MoHCW, but carers do not receive certificates. After training, caregivers are registered under the local health facilities. Tearfund has commissioned an exploratory study on roles and attitudes towards caregiver support. The research aims to document motivations of caregivers, issues around support given to caregivers and to assess different ways of compensating and supporting caregivers in Zimbabwe. Background research was carried out in preparation for this study and it informed the choice of the two case study organisations, namely FACT’s work in Chimanimani district and the World Vision-‐supported (transport supported) Zimbabwe National Network of People Living with HIV (ZNNP+) in Chipinge district. Objectives of the study The research is intended to investigate and document roles and attitudes towards caregiver support and compensation in Zimbabwe. The research objectives are:
a) To conduct case studies on two identified organisations in Zimbabwe. • to document historical and current programme design and practices towards caregivers • to explore programme staff perceptions of caregiver support and strategies
b) To document caregiver’s perceptions of support received in exemplar programmes. • to explore caregiver perceptions about support received • to identify gaps of caregiver support • to document basic costs of support to caregivers.
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Research team Rodwell Chaitezvi was responsible for the research in Zimbabwe. Rodwell has been involved in research work for more than 15 years working with local and international NGOs, donor agencies, government departments and private sector companies. Methods of the study The research employed a ‘mixed methods’ methodology that included: a) semi-‐structured interviews, b) reading background research, and c) focus group discussions (FGD). Notes were transcribed the same day to avoid recall bias. In addition to interviews and FGDs, the consultant also received brochures and annual reports related to caregiving from FACT. Time was the major limitation for the research. Island Hospice had gone through a restructuring exercise, so it took time to get connected to the right people and to secure appointments. ZNNP+ had no past carers so the consultant had to recruit past carers from other caregiving projects in the area. Further limitations were numerous power cuts and email connectivity challenges which were faced during the course of the study. Findings Document historical and current programme design and practices towards caregivers The two case study organisations came into being in response to the HIV and AIDS epidemic, but have since extended their scope to include other illnesses such as tuberculosis and cancer, epilepsy, hypertension, diabetes and caregiving in respect of prevention of mother to child transmission (PMTCT) for FACT. ZNNP+ has 32 caregivers in Chipinge, all of whom are people living with HIV. The project operates in eight wards, each with four carers (or caregivers). The caregivers operate under the district focal person. Activities of ZNNP+ are coordinated through the National AIDS Council (NAC) offices as they do not have offices at district level. Supportive supervision is lacking because the ZNNP+ does not have structures at district level. The caregivers are experienced after having worked in other caregiving projects. FACT has 30 caregivers under the PC project in Chimanimani. Eight of the ten carers who participated in the FGD were drawn from the CHBC project and so were caring for patients from the two projects since 2011. The caregivers operate in clusters and each cluster is under a cluster supervisor who supervises the secondary carers (ie caregivers who are not household members of the ill person) who work with the primary caregivers. Each cluster is linked to a government clinic for ongoing supervision, mentoring and referrals. Explore caregiver perceptions about the support they receive within the project they are working in ZNNP+ Caregivers do not receive any financial, material, ongoing refresher trainings and supportive supervision due to non-‐availability of funding. The only aspect of the programme funded is the training of the district focal person, whose training is sometimes funded by the Global Fund. This training takes the form of training of trainers and the focal person has to make sure the training cascades down to all carers. Carers also receive gloves from the local clinics, but most of the time they are not available. Though the caregivers are not supported they remain committed to the project because of they are people living with HIV. Carers used to get material support at the height of the HIV epidemic, but now they feel they are working for nothing. Though carers are not getting support now, financial incentives, uniforms, kits, medical assistance, foodpacks and income-‐generating projects (IGPs) are considered by them to be very important, but missing elements, in the support to caregivers. FACT Caregivers are grateful for the support and compensation they are getting, such as reimbursement of transport, emotional support, refresher trainings, IGPs and uniforms, but they still expect monthly financial allowances to take care of their immediate needs. Workshop allowances to compensate for lost
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income during workshops (income from vending/buying and selling and other piece jobs), medical, funeral and educational assistance were suggested as important missing elements in the support plan for carers. Stopping current support to caregivers would greatly affect programming and the participation of carers. Explore programme staff perceptions of caregivers’ compensation ZNNP+ Carers are committed to the project because they themselves are people living with HIV more than the compensation aspect because they want to make sure they get all the support they can. If they were not living with HIV, they would have stopped caregiving long ago due to lack of motivation and support. FACT Carers are a pool of hard-‐working and dedicated cadres who continue working even though they are not paid. What they receive in terms of compensation does not in any way reflect on the work they do. They are getting far less than they should for the work they are doing. They continue working hard but remain neglected. Identify gaps in provision of support from caregivers’ perspectives ZNNP+ Caregivers are not getting any support but identified lack of regular refresher trainings, no uniforms, non-‐availability of financial incentives, no training and money to start IGPs, non-‐availability of free medication and foodpacks (as caregivers are on ARVs – anti-‐retrovival drugs) as key gaps. None of the carers has thought of stopping caregiving regardless of not getting any support, because of the bond they have with the project. FACT Workshop allowances to compensate for lost income during workshops, monthly financial incentives and assistance in medical, education and funeral expenses emerged as the main gaps in support to carers. Most caregivers had at one point thought of stopping caregiving due to non-‐ availability of financial incentives found in the CHBC (another FACT project), non-‐availability of workshop allowances and non-‐refundable economic costs incurred while caregiving. One carer had left for South Africa where she is caregiving for a salary. Some carers had left the CHBC after realising that the project was not able to provide for their families. Identify basic costs of support to caregivers Caregiving work is done on a voluntary basis, so carers are not expected to work for a specified number of hours per day. They plan their day in such a way that they have enough time to work for their families before they start helping others. Basic costs of support to caregivers could not be established and the same applied to costs incurred by carers while caregiving, due to non-‐availability of records. It was clear from the interviews that carers do incur unrefunded costs while providing care. ZNNP+ One to two days per week are reserved for visiting patients, with each carer having between three to ten patients. Caregivers also take advantage of other community gatherings and busy days at the opportunistic infection clinic to engage with patients, further reducing the number of visits to clients. FACT Carers have between two to six home-‐bound clients whom they visit twice a week depending on their conditions, and between six to thirty ‘up and about’ clients whom they meet once a month through their support groups. Carers take advantage of ‘chisi’ day (a day on which people are not allowed to work in their fields) to visit patients so that productive days are reserved for economic activities. Island Hospice Island Hospice’s caregivers used to provide care to cancer patients only, but now care has been extended to include HIV, motor neuron disorder and renal failure patients. The project has changed over
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time because it used to focus on adult carers only, but now they are also focusing on younger carers who look after their sick relatives. These are given appropriate training necessary to provide care within the family set-‐up. Caregiving is not well supported in Zimbabwe. Some organisations such as FACT and Island Hospice did not pay financial incentives before, but instead only reimbursement on transport expenses, uniforms and trainings. However, now through the Global Fund some carers are getting US$14 per month. Even though the figure is too low, it is a positive move because carers are no longer willing to work for nothing, according to the Island Hospice training coordinator. They always require financial incentives. Island Hospice caregivers also have uniforms, kits (for needy patients only), ongoing trainings, wheelchairs, walking sticks (available for needy patients), emotional support and community gardens. Island Hospice provides training to caregivers from local and international NGOs, CBOs, Faith-‐based organisations (FBOs), government departments, faith healers and the clergy. Recommendations The key recommendations provided here are relevant for strengthening caregiver compensation across the case study organisations. They consist of actionable recommendations to encourage and improve partnerships meant to support caregivers.
• Implement supportive supervision and mentoring approaches that allow carers to learn from experienced colleagues; investigate possible use of retired, certified social workers to provide supportive supervision.
• Given that most caregivers rely on vending/buying and selling and other piece jobs for survival, consider a workshop allowance to compensate for the lost income during workshops.
• For sustainability, explore possible funding for IGPs to assist caregivers in getting an economic foothold.
• Investigate possible links/partnerships with organisations providing training services, for ongoing refresher trainings for caregivers.
• Provide compensation that enables carers who are not gainfully employed to be able to provide for their families and at the same time go to work motivated (eg stipends and travel reimbursement). Seek a careful balance between compensation and responsibilities.
• Explore possible links with organisations for the provision of material support such as uniforms, bags, hats, kits and assistance with general coordination of activities at district level.
• Given that caregiving is vital not only to care recipients but also to the broader economy, consider exploring possibilities of offering medical, educational and funeral assistance for carers through joint partnerships.
• Consider putting in place a tracking mechanism to document cost of support to caregivers and the economic costs incurred by carers while caregiving (out-‐of-‐pocket expenses).
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1. Introduction and background Tearfund is a faith-‐based organisation based in the United Kingdom. Through its HIV unit, Tearfund does HIV-‐related work in many countries, including Zimbabwe. Tearfund UK started funding work in Zimbabwe in 1987 through FACT, a CHBC programme based in Mutare. FACT is running the PC project in three sites in Manicaland, including Chimanimani district. Besides FACT, Tearfund is also funding Island Hospice, a local NGO to provide palliative care training to caregivers. Tearfund’s funding to FACT and Island Hospice depends on how much is sourced from external donors. For the 2013–14 financial year, FACT is receiving US$150,000 from Tearfund Zimbabwe. Island Hospice has provided facilitation of training in Zimbabwe and the region. Besides facilitating trainings, Island Hospice has a caregiving project in Mabvuku and Tafara (Harare), Chitungwiza (all funded by the Global Fund) and Chikwaka in Goromonzi district (where carers are not funded). Island Hospice works with the MoHCW, NAC, University of Zimbabwe’s Medical School, the Hospice Association of Zimbabwe (HOSPAZ) and other parties in the promotion of its palliative care programme. Background research (a consolidated interim report on interviews with international NGOs) was done in preparation for this case study and the research informed the choice of the case study organisations. STOPAIDS, previously known as the UK Consortium on AIDS and International Development, is a partner in this research project and has the largest number of members operating HIV care and support programmes in Zambia and Zimbabwe. This is the reason why Zimbabwe was selected. On the basis of this background, Tearfund, in partnership with the STOPAIDS’s Care and Support Initiative, agreed to carry out a case study on caregiver compensation and support in two organisations in Zimbabwe, namely FACT Mutare with the PC project in Chimanimani and ZNNP+ in Chipinge. Island Hospice has caregivers of its own. The findings about the caregiving project are presented in this report but no discussion, conclusion and recommendations are provided since Island Hospice was not part of the case study but only an ‘intermediary’ partner to provide training. Two case studies of caregiver compensation and support on projects funded by other international NGOs are being done in Zambia.
2. Purpose of the study The research is intended to investigate and document roles and attitudes towards caregiver support and compensation in Zimbabwe. The research scope was framed to document the motivations of caregivers, issues around support given to caregivers and assess the different ways of incentivising caregivers. The objectives of the research are:
a) To conduct case studies on two identified exemplar programmes in Zimbabwe. • to document historical and current programme design and practices towards caregivers • to explore programme staff perceptions of caregiver support and stategies
b) To document caregivers’ perceptions of support received in exemplar programmes. • to explore caregiver perceptions about support received • to identify gaps of caregiver support • to document basic costs of support to caregivers
3. The research team
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Rodwell Chaitezvi was responsible for the research in Zimbabwe. Rodwell has been involved in research work for more than 15 years, working with local and international NGOs, donor agencies, government departments and private sector companies.
4. Methods of the study The research employed a ‘mixed methods’ methodology that included: a) semi-‐structured interviews with the district focal person (ZNNP+), PC project coordinator (FACT), training coordinator (Island Hospice), short pre-‐FGD interviews with 17 current secondary carers (ten from FACT, eight females and two males and seven from ZNNP+, six females and one male), and seven past secondary caregivers (three from FACT, all females and four from other caregiving projects from Chipinge, all females), b) reading of a consolidated interim report on interviews with international NGOs (background research) and c) FGDs with the 17 current secondary caregivers. Notes were transcribed the same day to avoid recall bias. In addition to interviews and FGDs, the consultant also received brochures and annual reports with information related to caregiving from FACT. Time was the major limitation for the research. Island Hospice had gone through a restructuring exercise and the contacts given to the consultant were no longer with the organisation so it took time to get connected to the right people and to secure appointments. For ZNNP+, past caregivers could not be identified so the organisation had to recruit past caregivers from other caregiving projects in the area for these interviews. A further limitation was numerous power cuts and email connectivity challenges faced during the course of the project.
5. Pre-‐FGD interviews with current caregivers A total of 17 caregivers took part in the FGDs across the two organisations, 14 females and 3 males. Their ages ranged from 30 to 62 years. Four had gone up to standard six, four had gone through primary school only, one had not completed secondary schooling, and eight had completed secondary schooling. All caregivers from FACT had started working on the PC project in 2011, eight of them coming from the home-‐based care (HBC) project. Carers under ZNNP+ started caregiving for the project from 2007 to 2012, having worked with organisations such as Action Aid, Médecins du Monde (MDM), St James, Stepping Ahead and FACT previously. All carers under FACT were involved in some income-‐earning activities before caregiving. The activities included: owning a store, making mats, bricklaying, poultry, vending, gardening, Early Childhood Development (ECD) teacher, adult education facilitator. While caregiving, carers were involved in vending/buying and selling, a poultry project, a goat-‐rearing project, mat making, farming, owning a store and allowances from pastoring. Carers under ZNNP+ were involved in vending/buying and selling, ECD teaching, poultry and farming. Caregivers had gone into caregiving due to a number of reasons. Below are the reasons given by carers:
• lost close relatives to HIV so decided to fight it • used to collect ARVs for patients who could not walk, and that pulled the carers into it • used to take care of sick relatives so decided to do caregiving to help others • went into caregiving to get knowledge about HIV • to help others • left with three kids after husband died so developed interest to help orphans • encouraged by the district focal person • taking care of sick parents motivated the caregiver into caregiving • challenges faced by orphans motivated the caregiver to find ways of helping them
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6. Interviews with past caregivers
A total of seven past caregivers, all females, were interviewed across the two case study organisations. FACT provided the names of three while ZNNP+ could not supply any because their turnover rate is zero, so the consultant recruited past carers from other projects. Their ages ranged from 39 to 67 years, and the educational background ranged from standard six, some primary school to completed secondary. Only one had been formerly employed as a state-‐registered nurse before caregiving and did vending while giving care. Two caregivers had no income-‐earning activities before and while caregiving. Four others had had been working on a gardening project, making and selling jerseys and piece jobs. The past carers started practising between 1999 and 2005. They started caregiving because one wanted to take the lead in helping people with HIV, another got into it to help orphans, and yet another one wanted to get knowledge about HIV. One had her sick relatives helped by carers so wanted to help others as well. Carers stopped caregiving between 2009 and 2011 after working with organisations such as Action Aid, FACT, MDM and St James’s Franciscan sisters. The reasons given for stopping include: the NGO stopped operating in Chipinge, carers were sidelined by FACT (being left out for refresher training and ‘when I stopped caregiving no one from FACT bothered to ask why I decided to stop’), the organisation was accused of political interference (supporting the opposition’s agenda of regime change) and therefore the organisation had to cease its work. 6.1 Best part of caregiving Past carers gave the following as their best part of caregiving:
• helping bedridden patients recover • offering to help others without expecting payment • strong bond with the community • giving one’s life to helping others
6.2 Worst parts of caregiving These included:
• not being appreciated by the community • being sidelined by FACT • rejection by the community after the organisation was accused of political interference • no token of appreciation for caregivers • losing a patient after trying so hard to save their life
6.3 Coming back to caregiving: Only one out of the seven interviewed past caregivers ruled out any chances of a coming back to caregiving due to poor health (poor eyesight). Five were ready for a comeback anytime, while one was already back under the Towards Sustainable Use of Resources Organisation.
7. Research findings a) ZNNP+ Introduction ZNNP+ is a CBO based in Chipinge district of Manicaland and was established in 1992. The district focal persons (representatives) were selected in 2006 through the District AIDS Action Committees during the
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organisation’s first congress in Shamva district of Mashonaland Central province. ZNNP+ does not have offices at district level and their activities are coordinated through the NAC’s offices. According to the NAC’s representative in Chipinge, ZNNP+ is like a ‘pressure group’ at district level that ensures the full and meaningful participation of people living with HIV in HIV activities and programmes. World Vision International’s (WVI) health officer regards ZNNP+ as a key stakeholder because of their involvement in helping set up support groups, IGPs, and HIV awareness campaigns and provision of psychosocial support. According to him, WVI does not fund any of ZNNP+’s activities but at times contributes to transport assistance. The ZNNP+’s caregiving project does not receive any funding for its programming; however, the Global Fund has been funding the training of trainers for the district focal person such as the palliative care training of trainers offered by the University of Zimbabwe in October 2012. The focal person then has to make sure that the training cascades down to other caregivers under her organisation. 7.1 Document historical and current programme design and practices towards caregivers 7.1.1 Functioning of the project at CBO level ZNNP+ operates in eight wards of Chipinge with a team of 32 caregivers (four in each ward). All the caregivers are living with HIV, with limited participation of males because most do not want to share their HIV status with others and are not interested in doing voluntary work. Caregivers use their life experience and knowledge to support patients in the community, through home visits, support groups and community meetings. Carers provide information and counselling to reduce stigma and assist patients to adhere to treatment. Lack of coordination and supervision in caregiver activities was evident due to the absence of organisational structures at district level. Even though the NAC is assisting with coordination, it was not felt that they were doing enough as they had their own activities and projects. The operational guidelines and standards for ZNNP+ are different from other projects, which have funders, as funders dictate how projects are run. ZNNP+ caregivers themselves agree on how things are done in the caregiving project.
7.1.2 Types of people for whom care is provided ZNNP+ came into being in response to HIV, but the focus has shifted to include tuberculosis (TB) patients. For these two categories, carers help with screening for infection within the family (through a symptoms check for TB) then refer to health institutions for testing, ensure constant supply of condoms, monitor adherence for both, provide counselling and registering patients for food aid where it is available through programmes such as the World Food Programme (WFP). 7.1.3 Levels of caregivers Primary caregivers These are family members who are trained to provide care to their sick family members. Primary caregivers have direct physical contact with patients on a day-‐to-‐day basis. They make sure patients are taking their drugs on time, and carry out tasks such as dressing of wounds, bed bathing and feeding the patients. Primary carers provide updates on the patient’s condition to secondary caregivers, take patients to health institutions and provide counselling to the sick, including other family members. Secondary caregivers These are non-‐family members who visit patients in their homes to give support. This category of carers is responsible for keeping records of patients on first and second line of treatment, and the number of bedridden and housebound patients. They provide counselling to the family, monitor adherence to drugs including ARVs, refer patients to health facilities and submit reports to clinics/hospitals.
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7.1.4 How are caregivers selected? From the interview with the district focal person, it was clear that the selection of ZNNP+ caregivers is done in a transparent manner, through the various support groups. Because they are people who live with HIV, carers belong to support groups, and it is from these groups that they are selected. 7.1.5 Criteria for caregiver selection Carers should be able to manage confidentiality, as they will have access to patients’ health information. Some writing skills are required because they will be expected to write reports and to keep records. One has to be committed to helping others, must be available in the area most of the time, must be aged between 30 and 50 years old and have an outgoing personality. 7.1.6 How has work by caregivers changed over time? According to research participants, the increased engagement of primary caregivers changed the roles of secondary caregivers as their work has become relatively easy because the primary carers are now doing most of the work, leaving the secondary caregivers to do the supervisory roles. The availability of information about HIV has also transformed caregiving work. Family members used to neglect their sick relatives because they did not have adequate information about HIV and HIV-‐related illnesses. The caregiving role was left on the shoulders of the secondary caregivers, who were already overwhelmed. Knowledge has made it easier for secondary caregivers to visit more patients because their workload has been made lighter. The availability of ARVs helped reduce the number of bedridden patients – now there are people living with HIV who do not require regular visits and monitoring. 7.2 Explore caregiver perceptions about the support they receive within the project they are working in What compensation does the project provide to caregivers? Is it provided for all caregivers, or only some of them? The table below summarises the compensation provided by the project (ZNNP+) to caregivers.
Table 1
Type of Support
Description All/Some
Financial Support
No financial incentives for caregivers. Training allowances received years back.
All Some
In-‐kind support for caregivers
No in-‐kind support for caregivers. As people living with HIV, carers used to get foodpacks years back.
All Some
Equipment support
Only get gloves from the clinic but not always available. All
In-‐kind support for the cared-‐for
Reading material from the clinics. Medication including ARVs from the local clinic unless unavailable. Patients with HIV used to get foodpacks in previous years from WFP. Soap and Vaseline were also provided.
Some Some Some
Emotional Caregivers get support from the NAC ward person, the MoHCW and
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support from other carers. Some Other Some organisations used to pay school fees for children whose parents
were living with HIV in previous years when a lot of NGOs used to support people with HIV.
Some
7.2.1 Financial support Table 1 above shows that ZNNP+ does not provide financial support and compensation to its caregivers due to non-‐availability of funding. Though caregivers are aware that they work on a voluntary basis, they expect meaningful compensation, especially financial incentives to prevent compassion fatigue that arises from accumulative exposure to distress and the suffering of others, as this can result in burnout. The long-‐term effects of burnout can be permanent and can also prevent continuation of the caregiving role. These findings show that support by ZNNP+ to carers is not adequate and carers’ efforts are not being recognised. There is a need to come up with strategies to link up with other partners for the provision of support and compensation to motivate caregivers.
7.2.2 In-‐kind support to caregivers The research shows no in-‐kind support for caregivers now, even though they used to get foodpacks and cooking oil before, when some other organisations used to assist people living with HIV. According to the focal person, caregiving was better back in the years when carers used to get foodpacks, because now they really feel that they are working for nothing. Caregiving workload has become easier but in terms of compensation and support, it has become less.
7.2.3 In-‐kind support to the cared-‐for Those receiving care are now getting only reading material collected from the clinics even though they used to get foodpacks, medicine, laundry soap and Vaseline some years ago.
7.2.4 Emotional support Lack of emotional support among ZNNP+’s caregivers was noted by the consultant and this observation was confirmed by carers who felt that emotional support in the form of supportive supervision was rarely available, though the focal person said it was provided for through MoHCW’s ward-‐based health technicians, NAC ward-‐based focal persons and among carers themselves.
7.2.5 Training Lack of funding is challenging the provision of regular refresher training and there was no evidence of training follow-‐ups. The study shows us that all caregivers receive the National Home Care training which is the minimum requirement from the MoHCW before they start caregiving. This should be followed by refresher courses, which are informed by needs assessments. Nurses from local clinics/hospitals, the NAC, and the ZNNP+ district focal person have facilitated training for ZNNP+ carers. No certificates are given after training due to lack of funding. 7.2.6 What aspects of the compensation are important to you? The majority of caregivers said though they are not getting any compensation now, but they would be grateful to have a monthly financial incentive, regular training, protective clothing, uniforms and infection control kits. This finding indicates that caregivers expect compensation and support in order to be motivated to work. Even though they continue providing care, they are not motivated due to the absence of compensation and support mechanisms within ZNNP+. 7.2.7 What would happen if compensation is stopped? From interviews and the FGD it emerged that nothing would change if compensation for caregivers is stopped because they have been caregiving without support. Carers expressed confidence that they would continue with or without compensation although they are not motivated. This shows how
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dedicated the carers are to the project in that they are willing to help others even without getting payment. 7.2.8 Any changes noted over time in terms of caregiver compensation? The case study shows that ZNNP+ has not been funded, making it difficult to talk about any changes in the compensation of caregivers. However, carers say that when HIV was at its peak, they used to work with a number of NGOs and used to get a lot of reading material, at times training allowances, and soap, and they received foodpacks as people living with HIV. Some organisations even paid school fees for children whose parents were living with HIV. A lot of these organisations have since left because of political pressure, as they were accused of political interference (supporting the regime-‐change agenda and siding with the opposition) and because there were fewer people requiring care because ARVs were being provided. 7.2.9 What makes you proud of the caregiving project? The FGDs with carers showed that they are proud of what they are offering patients and how they are complementing the efforts of health institutions. The following were suggested by carers as aspects that make them proud of the caregiving project:
• Caregivers have been able to help patients, especially the bedridden ones, to recover and to go back to their normal life.
• Carers have managed to convince many people to go for HIV testing and counselling through sharing their own experiences, and those that they have helped are now living positively.
• They lobbied for the opening of the opportunistic infection clinic at the hospital because people living with HIV were facing a lot of discrimination when they went to collect their medication. This was done and the group is very proud.
• The fact that clients are able to get their drugs at the local clinic is very encouraging even though half the time drugs including ARVs are not available.
• The availability of HIV and HIV-‐related illnesses information on all platforms is making caregiving work very easy because clients are already well informed and are prepared to accept help.
• Caregiving work has become relatively easy because of the presence of primary caregivers, who have taken over some duties from secondary caregivers, such as meal preparation, personal hygiene, bathing and housekeeping.
7.3.0 Main concerns about caregiving project The responses from the interviews and the FGD suggested the following as concerns of caregivers on the project:
• The non-‐availability of tablets (ARVs) for young children living with HIV in the right sizes. Breaking the tablets is not only unhealthy, but it does not result in the right quantities being taken.
• Some caregivers living with HIV get tempted to go back to their risky old behaviours, such as the sale of sexual services, after realising that they are not getting any compensation from caregiving.
• Lack of refresher training to keep caregivers up to date with new developments may render the efforts of caregivers irrelevant.
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• Some people still do not accept that HIV-‐related illnesses are for real and that they kill. They still hide behind some diseases such as malaria and cancer while HIV-‐related diseases continue to kill them. This defeats the whole purpose of caregiving.
• Lack of incentives to keep caregivers motivated. Caregivers are aware that they work on voluntary basis but they expect some uniforms, financial incentives and protective clothing to keep them motivated.
7.3 Explore programme staff perceptions of caregiver compensation Staff report that ZNNP+ caregivers are living with HIV and very committed to the project. Their HIV status binds them to the project. The wish of the focal person is to have organisations coming in to support caregivers to keep them motivated. 7.4 Identify gaps in provision of support from caregivers’ perspectives It was evident from the interviews and the FGD that the current caregiving project was not providing adequate support for the caregivers. The following were gaps of support identified by carers:
• Lack of regular refresher training to keep caregivers up to speed with new developments. This is due to lack of funding. This results in knowledge gaps to caregivers.
• Non-‐availability of regular contact for supportive and mentoring supervision as a result of the lack of organisational structures within ZNNP+ at district level.
• Absence of training and seed money for IGPs, such as sewing and poultry, to help caregivers gain an economic foothold.
• Non-‐availability of material support for the carers in the form of uniforms, tennis shoes, bags, infection control kits and bicycles.
• Non-‐availability of financial allowances/incentives, no matter how small, to enable caregivers to buy soap and other necessities for their families.
• Lack of free medication for other health problems and lack of foodpacks (as were received before ARVs were introduced), despite the fact that most of the caregivers and patients are on ARVs and need to eat before taking their medication.
7.4.1 Have you thought of stopping caregiving? All FGD participants had not thought of stopping caregiving at all because of the attachment they have to the project. Their HIV status has created a bond between them and the project, so they feel they cannot afford to stop. From the interviews with carers, it was their wish to get recognition and financial incentives to be able to provide for their families. 7.4.2 Do you know people who have stopped caregiving? All participants in this study did not know of anyone who had stopped caregiving under ZNNP+ but knew people from other projects who have done so. Caregivers had left other projects after realising that the projects were not able to provide them with money to send their children to school. Some carers who had worked under projects such as MDM who used to get paid could not suddenly work for nothing after MDM’s withdrawal. 7.4.3 Turnover rate at ZNNP+ From the interviews and the FGD, it can be seen that ZNNP+ carers are all living with HIV and all are on ARVs, hence their commitment to the project, because they want to make sure they get all the support they can. Therefore, the turnover rate is zero. It was apparent from the study that the only time one leaves ZNNP+ is as a result of relocation or death.
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Though the turnover rate is zero, lack of motivation was evident due to lack of incentives, especially financial. Carers confirmed that if it was not for their HIV status, they would have left long ago due to lack of motivation. 7.5 Identify basic costs of support to caregivers Both current and past caregivers could not be drawn into coming up with costs of support to carers and costs incurred by carers because there are no records kept (tracking mechanism) and the fact that the work is done voluntarily, making it difficult to track. 7.5.1 Time for caregiving Time taken to perform caregiving is time away from a person’s own family responsibilities, even though caregiving is not considered a full-‐time job. According to FGD participants, carers must plan their work in such a way that they leave adequate time to do household chores and income-‐earning activities. This was confirmed by the district focal person, who said the idea of having four caregivers per ward is to try to make sure that carers do not walk long distances so as to free them for paid work. Caregivers confirmed that they look after between three and ten patients; the number of visits depends on the conditions of patients, although one to two days are recommended per week for visits. ‘Up and about’ clients are met once a month through their support groups. Caregivers are also taking advantage of other community gatherings to provide community members with information on HIV, as well as addressing engaging with patients at the opportunistic infection clinic on busy days when they go to collect their ARVs. This helps reduce the number of visits. 7.5.2 Costs incurred by caregivers According to Cranswick (2003), based on research in Canada, carers may incur economic costs in the process of maintaining the health and the well-‐being of their patients. They may miss either full or part of a day’s work due to unpaid caregiving duties. Instead of caregivers benefiting from the project, they may pay out-‐of-‐pocket expenses to assist the care receivers. Caregivers who were interviewed confirmed that they have given out soap, food handouts and even cash to assist patients because they felt they could not just walk away when a patient was desperate for help. This finding shows that it is not only the carers who require support, but those requiring care as well. Caregivers cannot be expected to visit households as secondary caregivers without any form of support for the needy cared for who may be encountering a range of situations including illness, poverty, depression and bereavement. This is not an easy task, even for a well-‐qualified social worker. One carer had to buy sugar for a patient who had diarrhoea and wanted a salt and sugar solution but did not have sugar. Cranswick (2003) said more than a third of caregivers report extra expenses due to their caregiving responsibilities. The consultant could not get reliable estimates of costs incurred by carers because of the absence of records.
8. Discussion ZNNP+ The purpose of the study was to investigate and document roles and attitudes towards caregiver support and compensation in Zimbabwe. The findings clearly show that caregivers who play a crucial role in maintaining the health, well-‐being and quality of life of patients/clients are not adequately compensated, but despite this they continue to do caregiving because they live with HIV themselves. It is their HIV status that binds them to the project now, because there is no compensation being offered. Despite their HIV status, their attachment to the project and knowing that they work on a voluntary basis, caregivers still expect to be compensated.
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They expect financial allowances to prevent fatigue that arises with cumulative exposure to the distress and suffering of others that can lead to burnout. ZNNP+ carers are not motivated because they do not get regular refresher trainings due to lack of funding and absence of coordination and supervision due to the non-‐availability of organisational structures at district level. Training for the focal point person is sometimes sponsored by the Global Fund and has to be cascaded downwards. Caregivers also lack uniforms, tennis shoes, infection control kits and even gloves, which are not always available at the local clinics. Carers have no access to capital and training to start IGPs, so they feel they are working for nothing. Male participation is minimal as males do not want to share their problems with others and are not prepared to do voluntary work. This supports one of the findings from the background research that participation of males was not common and that women were seen as natural carers, who are prepared to work even without payment. It was not clear from the study whether the carers who live with HIV would put in more or less effort if provided with other forms of support and compensation.
9. Research findings b) FACT 9.0 Introduction FACT is a Christian-‐based private voluntary organisation established in Mutare in 1987. It came into being as a response to HIV and HIV-‐related diseases, which were wreaking havoc at the time. It was made up of a pool of volunteers from different churches, who were trained in basic nursing care. FACT’s programmes started in an urban part of Mutare, moved out to a rural part of Mutare and now covers the whole of Manicaland province and beyond. In Chimanimani, FACT has two caregiving projects running, namely the CHBC programme funded by the Global Fund through HOSPAZ, with 60 carers and the palliative care programme with 30 carers funded by Tearfund. Twenty-‐two of the thirty caregivers under the PC project were drawn from the CHBC project. The PC project managed to engage the MoHCW, which is a positive move towards policy persuasion and this has made it possible for caregivers to work with local health institutions. The project has also managed to provide quality palliative care education to its caregivers, thereby ensuring a well-‐informed health workforce, equipped with the skills required to provide palliative care services. 9.1 How the PC project is functioning at district level FACT’s PC project has done well in the establishment of prerequisite structures to ensure delivery of an effective palliative care service. Caregivers are organised into clusters and each cluster is linked to a local health institution. The sisters in charge of the health facilities coordinate with the caregivers, monitoring and supervising their activities and providing emotional support. The caregivers and the local clinic nurses work as a team. The caregivers refer patients to the clinic where they are given priority to get treatment, and nurses refer patients to caregivers for follow-‐up. Teamwork is important for the success of the PC project. 9.2 Document historical and current programme design and practices towards caregivers 9.2.1 Type of people cared for under the PC project According to the project coordinator, the CHBC project came into being as a response to the AIDS pandemic. The project targeted the HIV bedridden and housebound patients. Now people are living positively with HIV as a result of ARVs, and the PC project scope has widened to provide care to cancer, diabetes, hypertension patients and people with other chronic conditions such as epilepsy. Caregiving is also being provided for under the PMTCT project, where pregnant mothers are encouraged to receive antenatal care and to use voluntary counselling and testing services. TB patients are being cared for and
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carers help with TB screening within the family through symptom checking before referring to clinics for testing as well as supervising patients under Directly Observed Treatment (DOT). 9.2.2 Levels of caregivers The PC project caregivers are grouped into clusters and each cluster is under a cluster supervisor, who supervises the secondary caregivers who work with primary caregivers at the family level. Intercare referrals between caregivers are common. Carers identify among themselves which carers are gifted in certain skills, such as counselling. They tend to refer patients requiring such services to these caregivers. Cluster supervisors are responsible for organising cluster meetings; assessing the needs of patients and making referrals, submitting cluster reports and making sure that IGPs are working well. They provide emotional support to both secondary and primary carers and they disseminate project information to caregivers. Secondary caregivers monitor adherence to treatment (for example, through pill counts), provide counselling to patients and other family members including primary carers, encourage pregnant mothers to use voluntary counselling and testing centres (VCT) and to receive antenatal care (and possibly to utilise PMTCT if applicable), keep track of patients’ health records and inform cluster supervisors of any changes, as well as infection control. 9.2.3 Caregiver selection The coordinator says the selection of caregivers is carried out on two levels, namely the community and the church levels. At the church level, pastors from different churches are asked to provide carers. Mainstream churches such as the Methodist, the Roman Catholic, the Salvation Army and others support the project because they have an arm within their structures looking at health issues, but the white garment churches and other new Pentecostal churches are against it. So it is possible to have some churches with many carers while others have none. In addition, village heads are asked to provide the names of people who could work as caregivers. The selected carers then go through the final selection/vetting by the nursing sisters of the local clinics. 9.2.4 Criteria for caregiver selection (Required Characteristics) The following were given as required characteristics of caregivers by participants in this research: the selected person should be a role model in the community, have good morals and be of sound health because caregiving is hard work and requires a lot of walking. One must be able to maintain patient confidentiality and be aged between 30 to 40 years (that is be mature). Carers also need to be able to read and write, be committed to assisting others and be available in the community most of the time. Desired characteristics, according to the project coordinator, include owning a cellphone and being able to send an SMS, being computer literate so as to be able to write reports and do research, and being able to speak at least two languages, English and a local language, with preference for Shona speakers. 9.2.5 How has the work of caregivers changed over time? It was clear from the interviews and the FGD that the work of carers has changed over time. Originally, secondary caregiving work primarily involved physical contact with patients. This has shifted because of the participation in the caregiving process of primary caregivers who are part of the family. Primary caregivers have taken over some of the roles from secondary carers such as bathing, feeding, making sure they are taking their medication and ensuring they are comfortable. Secondary caregivers are now coming in to monitor and, where necessary, refer patients to clinics. 9.3 Explore caregiver perceptions about the support they receive within the project they are working in
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Caregivers are individuals who provide ongoing care and assistance to people in need, without pay. They need all the support they can get to make sure they are motivated to continue. According to George and Gwyther (1986), caregivers are more likely to experience psychological symptoms when compared to non-‐carers, as caregiving responsibilities correlate with an increased vulnerability to anxiety, guilt, grief, rage and substance abuse. What compensation does the project provide to caregivers? Is it provided for all caregivers, or only some of them? The table below captures the compensation and support given to carers under FACT’s PC project. Table 2
Types of support Description All/some Financial support Carers are reimbursed for transport costs to workshops/training and
travelling with visitors from outside Zimbabwe. Seed money given in groups for IGPs to all PC caregivers. Site managers under palliative care receive US$10 monthly for airtime and transport to visit clusters and take reports to Mutare. Some caregivers drawn from CHBC receive UK$14 monthly, though they are still to get the money.
All All All Some
In-‐kind support for caregivers
Carers have uniforms, T-‐shirts, bags, trousers for men and skirts for women, umbrellas, tennis shoes. They receive soap, Vaseline. Regular refresher trainings for all caregivers under PC project. Carers get preferential treatment at local clinics as a way of recognising their efforts.
All All All All
Equipment support
Carers get kits but replenishing them is a challenge for organisations. Carers from ward eight got kits comprising of gloves, soap, Vaseline and JIK, while others carers are still to get these.
All Some
In-‐kind support for cared-‐for
Get treatment/drugs including ARV during home visits. Soap and Vaseline had been handed out to some patients.
Some Some
Emotional support
This was offered during debriefing sessions at cluster level by cluster supervisor, pastor, nursing sisters, and among carers themselves. Nursing sisters coordinate, supervise and support carers.
All
Other Some carers are included in the health centre committees and make decisions for the health centre. Carers are given the opportunities to address villagers on health matters at village meetings. Supportive supervision and mentoring home visits are provided. Accompanied by the trainers, carers visit patients so that the trainers can assess and help them. Caregivers get preferential treatment at local clinics as a way of recognising their efforts.
Some Some Some Some All
9.3.1 Financial support
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It was clear from all participants that the PC project does not provide financial allowances outside of reimbursements for transport expenses. Although caregivers were very grateful for the compensation and support they are getting under the PC project, they expect a monthly financial incentive from the project. All carers under the PC project received a one-‐off payment of seed money in groups for livelihoods projects. First they received training on IGPs, after which they were asked to write project proposals for the IGPs they wanted to do. Each group was given seed money for their proposals. They received money ranging from US$250 to US$735 and started goat-‐rearing and poultry projects. Some FGD participants, however, raised concern about the amounts that were distributed. Some felt the money was not enough for their project because they were given US$300 as the ceiling for the seed money, only to learn through the FGD that one group got US$735. FGD participants, especially those involved in the Internal Savings and Lending (ISAL) project, spoke highly of this innovative livelihoods strategy for sustainability. One participant had this to say about ISAL: ‘The seed money for IGPs is the best thing that has ever happened to us so far. Our group got US$735 and we started a poultry project but felt it was not doing well so start the ISAL scheme…’ The consultant met with members of the ISAL that is doing well and members from other projects such as the goat-‐rearing project that takes time to yield benefits. Caregivers in the goat-‐rearing project said that a monthly token of appreciation would assist them in taking care of their immediate needs while they wait to benefit from their project. Most caregivers were concerned about the non-‐availability of cash incentives and felt that their efforts were not being recognised. One caregiver commented: ‘It is sad to know that village health workers who are doing the same type of work are paid by the government yet we do not get anything.’ 9.3.2 In-‐kind support to carers This is divided into two categories, material support and non-‐material support. Material support Caregivers were grateful for the uniforms, as these gave them an identity and made them look the same despite differences in social status. According to one FGD participant, tennis shoes and uniforms helped them get through the cold winter months. The project coordinator stated that plans were underway to procure uniforms and kits with basic infection control items including gloves, notepads, and reportedly discussions were underway with clinics to see whether to include painkillers in the kits. Non-‐material support The study shows that knowledge/education is the main non-‐material support they are getting from the PC project. This prepares them to adequately deliver services under the palliative care programme. Caregivers are expected to go through the MoHCW-‐recommended National Home Care training before they start caregiving. This is then followed by regular refresher courses informed by gaps noted by the project coordinator. Caregivers interviewed during the study expressed positive appreciation for the knowledge and skills received during various types of training. The coordinator highlighted that training offered under the PC project is different from other caregiving projects because of the prevention and the anti-‐retroviral therapy (ART) components found in palliative care. Other caregivers viewed palliative care as a specialised project with specialised training, and all carers want to have the training. For monitoring under palliative care, caregivers get infection control kits and carers are accompanied by trainers/consultants and/or nurses so their patients get treatment which is not carried out in other projects. According to the programme coordinator, the differences in training are a source of potential conflict among caregivers, if not professionally handled. She said caregivers under other projects at first felt inferior to palliative care carers. FACT had to explain to them how different projects are funded. They then understood, and this does not impact on FACT’s programmes. She highlighted the low turnover rate per caregiver in the PC project as proof that things are working well within FACT and the PC project in particular.
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Training for livelihoods under the PC project is provided by FACT’s field officers with support from Agritex officers from the Ministry of Agriculture. MoHCW, through sisters in charge of local health centres, is involved in the health component of caregiving. Island Hospice is heavily involved in the training, mentoring and supervision of the PC carers. All PC caregivers received certificates of attendance and these can be used to seek caregiving employment in other districts or projects. As a way of motivating and recognising them, caregivers are represented in health centre committees where they participate in decision-‐making about health centres. FACT also supports caregivers by allowing them to attend celebrations to mark the World Day of Volunteers and with Christmas parties. Caregivers also get preferential treatment at local clinics and are always encouraged to have good working relationships with them. 9.3.3 Equipment support The study shows that PC caregivers receive kits but replenishing them was a challenge for organisations such as FACT and Island Hospice. Carers from ward eight got kits comprising of gloves, soap, Vaseline, JIK and painkillers (the painkillers are not kept by carers, but by health institutions; patients get referred to the clinics to access them). 9.3.4 In-‐kind support to the cared-‐for According to the programme coordinator, patients get treatment and/or drugs during mentoring and supervision home visits. At one time, some patients under the PC project got soap and Vaseline during the home visits. 9.3.5 Emotional support The interviews confirmed that all caregivers in the PC project get emotional support at all levels. According to the coordinator, FACT has employed a social worker to work with carers; their plan is to have him based in Chimanimani, closer to the caregivers. The sisters in charge of clinics, a pastor who is a caregiver and cluster supervisors provide emotional support during debriefing sessions with caregivers. These sessions are meant to provide updates and feedback as well as emotional support. All caregivers who participated in the FGD agreed that the nature of their work requires a lot of emotional support and were grateful that it was being provided. 9.3.6 Important aspects of support to caregivers According to study participants, IGPs, training and uniforms were considered very important aspects of caregiver support. IGPs bring food and money to carers. The knowledge acquired through training has given caregivers power and skills to perform their caregiving services while uniforms, T-‐shirts and tennis shoes were viewed as important, especially in winter, and also make carers look the same regardless of their social status. Financial incentives, though not being offered, were considered important as well. 9.3.7 What would happen if compensation stops? The general agreement from the FGD was that stopping the current support to caregivers would have a serious impact on the project. One carer had this to say: ‘If IGPs are stopped, work will be greatly affected. Without IGPs, we will put more effort on working for our families rather than helping others.’ Others thought stopping the reimbursement of transport would affect programming. Stopping such support would result in fewer people attending workshops and trainings, thereby affecting the project. Uniforms are viewed as a key aspect in the compensation of caregivers. Most felt that without uniforms some will drop out because they cannot afford decent clothes to look presentable.
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One caregiver felt nothing would change because they have been working for years without adequate compensation. She was of the view that caregivers who work in other projects that have stipends would be affected because they are not used to working without payment. 9.3.8 Changes in caregiver compensation over time Changes to the compensation and support to caregivers had been noted over time, according to carers. Caregivers used to get both material and financial compensation in the form of cash incentives, foodpacks and nutritional hampers because there were many players supporting them during these times. According to the project coordinator, the support is no longer provided because projects are now moving towards the group concept where caregivers are trained to do self-‐help projects. Projects can no longer sustain the support that was previously provided because most projects are ‘bleeding’. 9.3.9 What makes you especially proud of the caregiving project? According to the coordinator, the PC project has given the sick a new lease of life. 9.4.0 Caregivers’ best aspects of caregiving FGD participants said that working with bedridden patients and helping them recover, seeing many people getting tested because of the introduction of treatment/ARVs, and the fact that people are adhering to drugs are the best elements of the PC project. Carers also spoke highly of the education/knowledge that carers are getting from the PC project and the respect they command because of their involvement in it. 9.4.1 What are your main concerns about the caregiving project? The coordinator had this to say about her concerns: ‘I have one major question I always ask myself and the question is: “If this group of caregivers is gone, are we ever going to get other people like them? What is going to happen to caregiving?”’ She strongly felt that the older generation of caregivers is dedicated and continues to work with or without adequate compensation. She said though policies are in place to support caregivers, they do not translate into any benefits. She feels they need more benefits than they are getting. FGD participants were concerned about the white garment churches who continue to discourage their members from taking medication including ARVs, as this is working against their efforts. They were also concerned that clinics at times run out of drugs including ARVs, further complicating the condition of patients on the recovery path. Some families totally ignore their sick relatives and leave everything to secondary caregivers who might be overwhelmed. Lack of financial incentives was a concern to caregivers, as one had this to say: ‘We do not receive any form of payment and sometimes visit patients dirty because we cannot afford to buy soap.’ Caregivers said they would appreciate a monthly allowance to help them look presentable. 9.4 Explore programme staff perceptions of caregivers’ compensation According to the project coordinator, the PC project has a pool of hard-‐working caregivers, who remain dedicated to their cause even though they are not paid for their efforts. She said what they are getting as compensation does not reflect the value of the work that they are doing, citing the example of village health workers who are paid by the government while carers who work harder remain neglected. She said carers who are qualified and who show interest in up-‐scaling their skills by going for further training, even beyond caregiving, such as nurse training, should be given the platform and support to do so.
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9.5 Identify gaps in provision of support from caregivers’ perspectives 9.5.1 Important forms of compensation not available to caregivers According to responses from the study participants, the following are gaps in the provision of support to caregivers:
• Most caregivers rely on vending for their survival and expressed concern that workshops take away time from their income-‐earning activities. They are of the view that a workshop allowance would help compensate for the lost income.
• All caregivers were aware that they do caregiving on a voluntary basis and would appreciate a token of appreciation/stipend to enable them to buy soap and other necessities. They valued the IGPs, especially the ISAL, but expressed concern with some IGPs such as goat-‐rearing which take a long time before the members start benefiting.
• Bicycles were viewed as very important equipment for caregiving work because they enable caregivers to visit patients faster, and free them to do income-‐earning activities as well as cut travel expenses to submit reports.
• Medical, education and funeral assistance were all considered important but missing elements in the compensation and support of caregivers.
• Caregivers who are qualified and are interested in up-‐scaling their skills such as nurse training should be given career guidance and encouragement to achieve their dreams.
• One participant had this to say: ‘Housemaids do not work hard but get about US$180 a month. We work harder and we get nothing. I do not think our children will be able to do what we are doing, because one thing for sure is they will not be willing to work for nothing. It is better to get US$10 a month than nothing at all.’
9.5.2 Have you ever thought of stopping caregiving? The majority of caregivers said they had thought of stopping caregiving because of a number of factors. They noted that workshops are eating into their income-‐earning time, non-‐availability of financial incentives in the PC project and the transport costs related to the submission of reports. An example is one carer who requires US$2 every month for bus fares to submit reports. Some carers had thought of stopping because of the costs incurred in assisting care receivers (with food handouts and soap). The main reason why caregivers have not stopped is because they are hopeful that one day they will get recognition and rewards for their hard work, while some say they cannot turn their backs on the patients who have relied so much on them for assistance. 9.5.3 Do you know people who have stopped caregiving? The project coordinator said she knew of one female caregiver from the PC project who had left for greener pastures in South Africa. The project coordinator was not sure what she was doing in South Africa. Caregivers were aware of caregivers who had left the palliative care and other projects. The table below shows caregivers who had left the palliative care and the CHBC projects, according to FGD participants. Table 3
AGE SEX EDUCATION PROJECT WHAT THEY ARE DOING NOW 34 F Completed secondary PC Caregiving in South Africa 30s F Not known GF/HOSPAZ Domestic work in Bulawayo
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30s M Completed secondary GF/HOSPAZ Working in a diamond mine
Unconfirmed reports from carers say one young caregiver, 32 years old (education not known), had gone back to sex work after failing to get financial incentives from caregiving. Two other females were rumoured to have left CHBC; one was said to be doing vegetable vending in Mutare town and the whereabouts of the second woman were not known.
9.6. Identify basic costs of support to caregivers 9.6.1 Time for caregiving The study shows that caregiving is done on a voluntary basis, and as such caregivers have to plan their day in such a way that they work for their families and then use the remaining time helping others. This is in line with information from Tearfund’s Roots Guides publication series (background research) that says carers must have time to support their families. According to the project coordinator, hours of work for caregivers are not clearly specified but carers generally work more than expected. Caregivers take advantage of the ‘chisi’ day (a day that people are not allowed to work in their fields. This is a traditional practice and the day is selected by the chief with guidance from the spirit media of the area) to visit their patients, to make sure productive (in the sense of income-‐earning) days are reserved for income-‐generating activities. It was clear from the FGD that time for caring is different for each caregiver depending on the number of patients one is caring for and their conditions. Carers and the coordinator say they care for an average of between two and six bedridden and housebound clients, visited twice a week (time with one patient should be between 30 and 45 minutes) and between six and thirty up-‐and-‐about clients who are met once a month through their support groups. 9.6.2 Cost incurred by caregivers It was evident from the FGD that caregivers continue to assist their patients in cash and in-‐kind so that they can travel, have food or buy basic commodities such as soap and sugar. One carer had to sell a chicken to raise money for her patient to go and collect ARVs from the hospital because the local clinic was out of stock. However, caregivers could not be drawn into coming up with amounts they give out to their patients. They indicated that it is not refundable so they do not bother keeping records.
10. Discussion FACT The purpose of the study was to investigate and document the roles and attitudes towards caregiver support and compensation in Zimbabwe. From the findings it was evident that caregivers under the FACT PC project receive adequate training and refresher courses to enable them to perform their roles well. They are receiving supportive and mentoring supervision. They have uniforms, bags, kits, umbrellas and IGPs. They are very grateful for all the support they are getting, but they expect more in terms of compensation, especially financial incentives. Most caregivers who took part in the study do not have permanent employment so rely on piece jobs and vending. Workshops take time out of their income-‐ earning time so they would appreciate a workshop allowance to compensate for the lost income. Since carers do not have a financial allowance they would appreciate assistance with funeral, education and medical expenses. Although caregivers are involved in IGPs, some are doing well while others projects (such as the goat rearing) take a long time before members start enjoying benefits. Carers suggested
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that a financial incentive would help cover them for their immediate needs while they wait for IGP benefits. The majority of caregivers who took part in the study had at one time thought of stopping caregiving due to of a number of reasons that include the non-‐refunded transport costs they incur while caregiving and the non-‐availability of cash incentives. One carer had stopped caregiving after realising that caregiving was not able to provide for her needs and she is working as a caregiver for a salary in South Africa. If the existing compensation of carers is stopped the project will be seriously impacted. Stopping IGPs would mean carers spending more time working to raise income rather than helping others. Should reimbursements of transport be stopped it will mean fewer people attending workshops, resulting in a deterioration of the quality of caregiving. From the interviews it was found that the older generation of caregivers was dedicated and remained committed to the project with or without adequate compensation. It was not clear from the study whether the younger generation of caregivers would be willing to work on a voluntary basis, though some participants in the study confirmed that the younger generation of carers would not be willing to work for no payment. There is a need for further research to look at what would happen to the caregiving project after the older generation of caregivers is gone.
11. Findings (Island Hospice) Island Hospice is a local NGO that was established in 1979. It was the first hospice in Africa and a well-‐known centre of excellence in the provision of palliative care in Zimbabwe and in the region.
11.1 How has the work that Island Hospice does on HBC changed over time? It was evident from the interview with the training coordinator that a lot has changed in terms of caregiving work. Island Hospice used to provide home and hospital visits to clients but now can no longer afford hospital visits due to a lack of funding, as this has forced them to restructure and as a result their office staff is limited. The project used to provide care to cancer patients only but later care was extended to HIV, motor neuron disorder and patients with renal failure, plus bereavement services. This extension happened after the realisation that cancer was not the only terminal illness people were facing. The CHBC project used to focus on adult carers only but now includes younger carers after it was realised that there were young people who were taking care of their sick relatives. After young carers are identified by adult carers (secondary caregivers), they are given appropriate training not to become community carers but to be able to provide care to their relatives. The interview also revealed that caregivers are no longer willing to work for nothing; they require compensation, especially financial, to provide for their families. This finding means that carers are always expecting financial payment for the caregiving responsibilities they perform regardless of whether payment was promised or not when they enrolled. They are working in the hope that some day they will get paid. 11.2 Forms of training offered Most of the training offered by Island Hospice is not initial training to caregivers. Instead Island Hospice provides the palliative care component to carers who are already working as caregivers. Training is provided to Island Hospice’s own caregivers as well as those of other organisations. The forms of training vary according to the group. The commonly used forms are the lecture method, PowerPoint presentations, discussions and case studies.
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For Tearfund partners, the training offered covers hypertension, epilepsy, TB, cancer, HIV, ART, disclosure, end of life, bereavement, self-‐care, needs of a dying child, roles of a caregiver, recording and report writing, pain assessment and ethical issues. 11.3 For how many organisations does Island Hospice provide training for? Island Hospice provides training in Zimbabwe and in the region. According to the training coordinator, Island Hospice has facilitated training in Botswana, Mozambique, Namibia and Tanzania. In Zimbabwe they have facilitated training for government ministries/departments, the University of Zimbabwe’s medical school, health professionals, faith healers and the clergy, international and local NGOs and FBOs. Names of organisations for which training has been facilitated include but are not limited to the following: CARE International in Zimbabwe, World Vision International, Action Aid, Catholic Relief Services, UNICEF, Zimbabwe AIDS Network, Catholic Agency for Overseas Development, Zimbabwe Prison Services and FACT. 11.4 How has Island Hospice’s work on training caregivers changed over time in five to seven years? The content of training has not changed much; it is still the same PC with the exception of additional information. The forms of training are varied depending on the background of the group. Forms of training used for medical students will be different from forms used with caregivers. While PowerPoint presentations and case studies may be used with health professionals, flipcharts and the lecture method could be appropriate for caregivers. Varied training forms are employed for better understanding. 11.5 What practices has Island Hospice seen in organisations for which it trains in respect of compensation of caregivers? Table 4 below shows practices noted by Island Hospice in respect of caregiver compensation in organisations for which it trains carers. Table 4 Types of support Description All/some Financial support Caregivers not well supported in Zimbabwe.
For most organisations reimbursement of transport costs only.
Bad practice: reasonable support needed
In-‐kind support for caregivers
Organisations provide uniforms to caregivers. Caregivers are trained and get seed money for IGPs.
IGPs: good practice, as carers will have something to fall back on
Equipment support
Kits are available only for deserving patients.
Good practice
In-‐kind support to cared-‐for
They get drugs from the local clinics, though they are not always available.
Bad practice
Emotional support Caregivers are encouraged to join support groups in order to share information and experiences. Emotional support provided through debriefing sessions, and some organisations such as FACT have employed a social worker to work with carers to make sure there is someone to assist carers at all times.
Good practice
Other Nothing given.
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11.5.1 Financial support It is clear that caregivers are no longer willing to work for nothing; they expect payment, especially financial payment. Without financial payment burnout increases, leading to dropping out or less effort being put into caregiving. According to the training coordinator, there is a need to learn from Namibia and Botswana on how they compensate their secondary caregivers. 11.5.2 In-‐kind support Most organisations offer uniforms to all caregivers. IGPs are often used to generate income for carers and to motivate them. FACT has IGPs for carers. 11.5.3 On equipment, the training coordinator mentioned kits as the commonly used equipment, however it was clear that replenishing the kits was a challenge for most organisations. She recommended that all caregiving organisations should have access to wheelchairs and walking sticks to lend out to needy patients. 11.5.4 In-‐kind support to care receivers Patients are supposed to be getting drugs from the local clinics but these are not always available. No organisation was offering foodpacks to patients. 11.5.5 Emotional support The coordinator said that caregivers are encouraged to be part of support groups, and to work as a group helping and sharing with each other. Organisations provide group debriefing sessions to provide emotional support to carers. FACT has employed a social worker to help carers and this is good because there will be someone to help carers at all times. From her experience she said that she had seen organisations employing health professionals doing well in providing emotional support because the professionals are well informed and better equipped to deal with such issues. 11.6 Have you seen any changes over time in what organisations provide in respect of compensation of caregivers? The coordinator pointed out that caregivers used to work voluntarily (for nothing). Now efforts are underway to try to provide financial incentives, though the figures being offered are still low. For example, FACT and Island Hospice are being funded by the Global Fund at UK$14 per caregiver per month. This is a small amount; nevertheless, a step in the right direction. Donors are also coming with IGPs to support carers, which is good for sustainability. 11.7 Has Island Hospice ever employed caregivers? Island Hospice has always employed carers: the Global Fund selected to work with them because they knew they had caregivers. The coming in of the Global Fund was a blessing to them because they were previously not paying the carers. Island Hospice has caregiving projects in Mabvuku and Tafara in Harare and in Chitungwiza, funded by the Global Fund, while carers in Chikwaka in Goromonzi district are not funded. 11.8 For what type of people did Island Hospice provide care? Care has been provided to patients with cancer, HIV, motor neuron disorder and renal failure. 11.9 Hours of work for caregivers The general rule is that caregivers should not spend too much time with the sick; instead, more time should be spent on income-‐earning activities for their own family. It is recommended that they put aside two or three days per week for caregiving, but at times the demands by the Global Fund that one carer
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should have about eight patients may mean more or less time in the field depending on the conditions of the patients. 11.10 Are caregivers permitted to support patients from their own pocket? According to the coordinator, caregivers are not allowed to support patients from their own pocket. She said carers should report patients requiring assistance to social services. Some carers end up doing it in order for them to be accepted by the patient or the family, which is wrong in the eyes of the training coordinator. 11.11 Level of caregivers Caregivers operate at three levels. There is the focal point person at the top, one in each area where Island Hospice has projects. He/she is responsible for communicating with carers, coordinating all activities, mobilising caregivers for meetings and projects activities, and assisting at Island Hospice clinics in their area of operation. The team leaders are responsible for coordinating with a number of carers in the team, mobilising for meetings and other activities, communicating with the focal point person, supervising and motivating carers under them. Secondary caregivers monitor patients’ conditions, keep records and refer them to clinics. They impart communication skills, bed bathing and feeding tips to primary care givers. 11.12 Briefly describe compensation of caregivers under Island Hospice Table 5 below describes the compensation of carers under Island Hospice. . Table 5 Types of support Description All/some Financial support A monthly financial allowance of UK$14 for carers in Harare and
Chitungwiza from the Global Fund (money still to be received). Carers are not happy about the delays in payment since the end of 2012 or early 2013 when the Global Fund came on board.
Some
In-‐kind support for caregivers
All carers have blue uniforms and bags. Symptom management done for carers who are living with HIV by Island Hospice, then referred to clinics for ARVs. Staff contributions in the event of a bereavement to assist the unfortunate caregiver.
All Some Some
Equipment support
Island Hospice has wheelchairs and walking sticks to lend to needy clients.
Some
In-‐kind support for cared-‐for
Nothing now. Used to get foodpacks and cooking oil through John Snow International (international NGO) but they stopped operating in Zimbabwe.
All Some
Emotional support Debriefing sessions, supervisory group sessions, and mentoring sessions are platforms for providing emotional support. Carers taught about self-‐care and encouraged to take time out.
All
Other Community gardens for caregivers with assistance from the Global Fund (training and seeds). In Chikwaka, a solar dryer was donated for drying vegetables. Carers are getting food and income from the
Some
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gardens. 11.12.1 Financial incentives Caregivers in Mabvuku, Tafara and Chitungwiza are under the Global Fund and are meant to get UK$14 a month but are yet to get the money since late 2012 or early 2013 when the funding agreement started. Caregivers are not happy about not yet receiving the promised payments. Carers in Chikwaka are not getting any financial incentives. OAK Foundation has promised to come in and pay some caregivers about UK$8 per month. 11.12.2 In-‐kind support All caregivers have uniforms, bags and a HBC kit provided by the Global Fund through HOSPAZ, but kits are not given to all carers, only to carers with needy patients. Some of the carers are living with HIV so Island Hospice does symptom management and referrals for ARVs. The coordinator said in the event of bereavement, Island Hospice staff makes contributions to support the unfortunate caregiver. 11.12.3 Equipment Island Hospice has wheelchairs and walking sticks for needy patients but these remain the property of Island Hospice. The coordinator encourages all caregiving organisations to have these. 11.12.4 In-‐kind support to patients Island Hospice used to provide foodpacks and cooking oil to patients through John Snow International, which provided food for people living with HIV, before they stopped operating in Zimbabwe. 11.12.5 Emotional support The coordinator was upbeat about this. She said, ‘This is our business; this is what we do best for our caregivers.’ Emotional support was being provided for caregivers through debriefing sessions, supervisory sessions, group sessions and mentorship sessions. Carers are taught about self-‐care and encouraged to take time out for themselves. 11.13 Other forms of support to caregivers Island Hospice established community gardens with the assistances of the Global Fund in respect of training and seeds to allow caregivers to have something to fall back on. Caregivers are getting money and food from the project, and orphans and other vulnerable children (OVCs) are also getting vegetables from the gardens. For the Chikwaka garden, solar dryers were provided years back for drying vegetables but the coordinator was not sure whether they are still there. 11.14 What are your mains concerns about caregiving in Zimbabwe? The coordinator said that caregivers do not get the support they deserve, and that organisations fail to assist caregivers in need of help because they cannot afford to do so. Carers have children who want food and want to go to school like other children so need to be supported. The coordinator was in favour of caregiver compensation even if it meant putting their children under the government’s Basic Education Assistance Module, as a way of helping them. This finding means carers are not getting adequate compensation and deserve more than they are getting now. 11.15 Additional information? The coordinator felt that caregivers who are intelligent and are qualified should be recommended for further training, such as nurses training. They need to be guided towards achieving such dreams.
12. Recommendations
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The key recommendations provided here are relevant for caregiver compensation strengthening across the case study organisations and represent actionable recommendations to encourage and improve partnerships meant to support caregivers.
• Implement supportive supervision and mentoring approaches that allow carers to learn from experienced colleagues; investigate possible use of retired, certified social workers to provide supportive supervision.
• Given that most caregivers rely on vending and piece jobs for survival, consider a workshop allowance to compensate for the lost income during workshops.
• For sustainability, explore possible funding for IGPs to assist caregivers in getting an economic foothold.
• Investigate possible links/partnerships with organisations providing training services for ongoing refresher trainings for carers.
• Provide compensation that enables carers who are not gainfully employed (ie in paid employment) to be able to provide for their families and at the same time go to work motivated (eg stipends and travel reimbursements). Seek a careful balance between compensation and responsibilities.
• Explore possible links with organisations for the provision of material support such as uniforms, bags, hats, kits and assistance with general coordination of activities at district level.
• Given that caregiving is vital not only to care recipients, but also to the broader economy, consider exploring possibilities of offering medical, educational and funeral assistance for carers through joint partnerships.
• Consider putting in place a tracking mechanism to document the cost of support to caregivers and the costs incurred by carers (out-‐of-‐pocket expenses).
13. Conclusions
As can be seen from the information presented, caregivers are vital not only to those to whom they provide care, but also to the formal health system and the broader economy. They are a pool of dedicated cadres who are committed to their work. Even though the carers know that they work as volunteers, they always expect meaningful compensation, especially financial incentives. Besides financial incentives, carers also expect to have adequate training (initial and refreshers), supportive and mentoring supervision, kits, uniforms, tennis shoes, bags, bicycles, IGPs, assisted funeral cover and educational assistance. They also expect compensation for income-‐earning time lost through attending workshops (workshop allowance). The two case study organisations came into being in response to HIV, but since this time the scope has expanded to include other chronic illnesses such as TB, cancer, diabetes, epilepsy and hypertension. The selection of carers is done transparently and male participation is very low. Carers’ roles have changed because of the presence of primary caregivers who have taken over some roles previously performed by secondary carers. One interesting observation was that the majority of carers who are compensated and supported had thought of stopping caregiving, while carers who are not compensated but live with HIV had not thought of stopping because of the attachment they have to the project. There is a need for further research to investigate the future of caregiving projects, taking into account the needs of the new generation of caregivers who might not be willing to work for no payment.
14. References Cranswick, K. (2003). General Social Survey Cycle 16: Caring for an Aging Society. Ottawa: Statistics Canada.
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George, L. K. and Gwyther, L. P. (1986). Caregiver’s well-‐being: a multidimensional examination of family caregivers of demented adults. Gerontologist, 26 (3), 253–259. Tearfund. Consolidated interim report on interviews with international NGOs.